27 research outputs found

    Insight Report: ā€œInnovative, automated use of real-world healthcare data to improve outcomes for patients with ovarian cancerā€ project online public involvement session

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    A summary of the insights gathered from a public involvement discussion involving patients and cares with lived experience of ovarian cancer and their views on a health data project ā€œInnovative, automated use of real-world healthcare data to improve outcomes for patients with ovarian cancer

    Report 14: Online community involvement in COVID-19 research & outbreak response: early insights from a UK perspective

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    The Patient Experience Research Centre (PERC) at Imperial College London is developing research to explore and understand peopleā€™s views about, experiences of and behavioural responses to the outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly - for example in mathematical modelling and policy - PERC launched an online community involvement initiative that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement. Priority areas for COVID-19 research Vaccine development was considered the most urgent research priority for many respondents. Social studies exploring the publicā€™s experiences, risk perceptions and behaviours during this outbreak were necessary and important according to 95% of the respondents. Such research could: Improve the way the current outbreak response is planned and implemented; Improve the way information and guidance is provided to and understood by the public; Optimise the support provided to communities and vulnerable groups; and Improve future outbreak preparedness. Other recommended areas of research included: Understanding the role of the media in influencing how people react and respond; Furthering our basic understanding of the virus ā€“ how it spreads, who it affects the most and why, and whether people achieve and maintain immunity after being infected; Critiquing the UKā€™s response to the pandemic against that of other countries; and Ensuring lessons can be learnt from this outbreak to better equip us for future outbreaks, and public health emergencies in general. Key unmet needs amongst communities The main challenges described by respondents were ineffective communication, including access to information and information overload; and conflicting guidance and misinformation. Respondentsā€™ described feelings of concern, confusion and, in some cases, panic as a result of these communication and information challenges. Others shared their frustration that there was nowhere to post their concerns or questions. In addition, respondents expressed a need for more detailed and bespoke practical guidance about their risk and how best to prepare and protect themselves and their loved ones. Almost half (47%) wanted to hear about the latest research on the virus, and 45% wanted a dedicated internet portal where they could access the latest information and trusted guidance. Making information more accessible to different communities, including those who are not online and those who have English as a second language was also highlighted as a priority

    The role of public involvement in the design of the first SARS-CoV-2 human challenge study during an evolving pandemic

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    High quality health care research must involve patients and the public. This ensures research is important, relevant and acceptable to those it is designed to benefit. The worldā€™s first human challenge study with SARS-CoV-2 undertook detailed public involvement to inform study design despite the urgency to review and establish the study. The work was integral to the UK Research Ethics Committee review and approval of the study. Discussion with individuals from ethnic minorities within the UK population supported decision-making around the study exclusion criteria. Public review of study materials for consent processes led to the addition of new information, comparisons and visual aids to help volunteers consider the practicalities and risks involved in participating. A discussion exploring the acceptability of a human challenge study with SARS-CoV-2 taking place in the UK, given the current context of the pandemic, identified overall support for the study. Public concern for the wellbeing of trial participants, as a consequence of isolation, was identified. We outline our approach to public involvement and its impact on study design

    Better than nothing? Patient-delivered partner therapy and partner notification for chlamydia: the views of Australian general practitioners

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    <p>Abstract</p> <p>Background</p> <p>Genital chlamydia is the most commonly notified sexually transmissible infection (STI) in Australia and worldwide and can have serious reproductive health outcomes. Partner notification, testing and treatment are important facets of chlamydia control. Traditional methods of partner notification are not reaching enough partners to effectively control transmission of chlamydia. Patient-delivered partner therapy (PDPT) has been shown to improve the treatment of sexual partners. In Australia, General Practitioners (GPs) are responsible for the bulk of chlamydia testing, diagnosis, treatment and follow up. This study aimed to determine the views and practices of Australian general practitioners (GPs) in relation to partner notification and PDPT for chlamydia and explored GPs' perceptions of their patients' barriers to notifying partners of a chlamydia diagnosis.</p> <p>Methods</p> <p>In-depth, semi-structured telephone interviews were conducted with 40 general practitioners (GPs) from rural, regional and urban Australia from November 2006 to March 2007. Topics covered: GPs' current practice and views about partner notification, perceived barriers and useful supports, previous use of and views regarding PDPT.</p> <p>Transcripts were imported into NVivo7 and subjected to thematic analysis. Data saturation was reached after 32 interviews had been completed.</p> <p>Results</p> <p>Perceived barriers to patients telling partners (patient referral) included: stigma; age and cultural background; casual or long-term relationship, ongoing relationship or not. Barriers to GPs undertaking partner notification (provider referral) included: lack of time and staff; lack of contact details; uncertainty about the legality of contacting partners and whether this constitutes breach of patient confidentiality; and feeling both personally uncomfortable and inadequately trained to contact someone who is not their patient. GPs were divided on the use of PDPT - many felt concerned that it is not best clinical practice but many also felt that it is better than nothing.</p> <p>GPs identified the following factors which they considered would facilitate partner notification: clear clinical guidelines; a legal framework around partner notification; a formal chlamydia screening program; financial incentives; education and practical support for health professionals, and raising awareness of chlamydia in the community, in particular amongst young people.</p> <p>Conclusions</p> <p>GPs reported some partners do not seek medical treatment even after they are notified of being a sexual contact of a patient with chlamydia. More routine use of PDPT may help address this issue however GPs in this study had negative attitudes to the use of PDPT. Appropriate guidelines and legislation may make the use of PDPT more acceptable to Australian GPs.</p

    Insight Report: Metabolic medicine and endocrinology online public involvement session on weight and fertility

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    Summary report on the views of members of the public on the proposed research on weight and fertility by the Metabolic Medicine and Endocrinology Theme of the Imperial Biomedical Research Centre

    Usability and acceptability of home-based self-testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) antibodies for population surveillance

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    BACKGROUND: This study assesses acceptability and usability of home-based self-testing for SARS-CoV-2 antibodies using lateral flow immunoassays (LFIA). METHODS: We carried out public involvement and pilot testing in 315 volunteers to improve usability. Feedback was obtained through online discussions, questionnaires, observations and interviews of people who tried the test at home. This informed the design of a nationally representative survey of adults in England using two LFIAs (LFIA1 and LFIA2) which were sent to 10,600 and 3,800 participants, respectively, who provided further feedback. RESULTS: Public involvement and pilot testing showed high levels of acceptability, but limitations with the usability of kits. Most people reported completing the test; however, they identified difficulties with practical aspects of the kit, particularly the lancet and pipette, a need for clearer instructions and more guidance on interpretation of results. In the national study, 99.3% (8,693/8,754) of LFIA1 and 98.4% (2,911/2,957) of LFIA2 respondents attempted the test and 97.5% and 97.8% of respondents completed it, respectively. Most found the instructions easy to understand, but some reported difficulties using the pipette (LFIA1: 17.7%) and applying the blood drop to the cassette (LFIA2: 31.3%). Most respondents obtained a valid result (LFIA1: 91.5%; LFIA2: 94.4%). Overall there was substantial concordance between participant and clinician interpreted results (kappa: LFIA1 0.72; LFIA2 0.89). CONCLUSION: Impactful public involvement is feasible in a rapid response setting. Home self-testing with LFIAs can be used with a high degree of acceptability and usability by adults, making them a good option for use in seroprevalence surveys

    Representing workers on occupational safety and health: some lessons from a largely ignored history

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    The decade from 1970 witnessed major reforms of occupational health and safety (OSH) laws in Western Europe, North America and Australasia. The establishment of worker representation in OSH was one of their most significant features. Largely overlooked in commentary then or since however was the fact that worker representation in safety had a far longer history, having operated in coal mining from a century earlier in some countries. The purpose of this paper is not so much to fill this historical gap as to examine this earlier development in terms of its contribution to better understand worker representation in OSH at the present time
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